just 2 sleeps

OK we are all packed and awaiting the taxi.
It seems I am still in the eye of the storm...........I am still numb able to talk matter a fact about Friday no tears no stress, but I have no idea how long this will last! so if you are that security guard at the airport that tackled my tiny 6 yr old when in an ASD meltdown moment ran through your security, make sure you think today I could crack at any moment, consider your self warned. Mummy tiger is not ever far!!

So I cant blog from my ipad gerrr so this maybe the last blog until we have made it out the other side.
I did not intent to update her journey, preferring to spend all my energy on my baby, but I will however catch you up after.

thank you for reading and pls pray, cross fingers whatever works for you on Friday the 5th of October.............the day Danika rocks her surgery.

love Lea

OMG 5 sleeps to go

We have been to the RCH again this time to see the Ocular surgeon and his team, had bloods done for the transfusion, photos for the surgeons and then the pharmacy for pre opp antibiotics to try to dry up as much mucus as possible (snot in the brain is bad) quote from the brain surgeon.

Got home to a freezer full of lovingly cooked food and a goodie basket, I have some of the worlds most amazing woman as my friends and these special mums all have children with different abilities as well but they found time in their world to think of us.................  Kylie, Sallyanne,Kylee and Erin my MOFO (Mothers Of Faboulas Offspring) family

Our days have been flying past in a daze or a state of  heightened awareness.
We spent hours with Steve Lovegrove our heartfelt photographer, Danika was great she loved it, such the little poser. Mixed emotions about it but it was fabulous there are some super special people in this world and thank you doesn't cut it, but I am thankful very thankful

Danika went to school on Friday, Darren picked her up and he wasn't expecting to have crying teachers asking him questions. We aren't sure yet if we will send her to school Monday and Tuesday as there were many kids missing from class and we don't want her getting anything.

Packing for us is a pain in the bum and while doing a load of washing I found the Do Rag she was sent from the USA from Cranio Care Bears and I had a moment then as I put it aside to pack, Ive brought a few shirts that do up at the front and her PJS all do up at the front so that's good.

We have had family visit and call and it seems strange to me to hear them talking about the operation almost like its not real, not sure why I feel like that and I'm not going to worry about it either.

Ive been busy downloading all Danika's music and her favourite TV show Pepper Pig. thinking off all the special things she may want to have with her in hospital, she has a small blue soft toy dinosaur that Claire brought her and a few other special toys that will be packed.

A special card came in the post this week





 

11 days

Photo meet and greet at 3pm today, cant wait I hope Danika is going to let Steve take photos of her, I don't care if he gets grumpy, angry mad Danika I want to catch it all.

School, met with the Special education support teacher today as its a student free day today. She tried hard not to cry but didn't do to good a job. But that's fine they all care so much about our little beauty.

getting our flights sorted for tomorrow to see the Ocular surgeon. Kids going in different directions and my parents planing leave from work and a trip from WA to Melbourne for the 4th.

My head is swimming with things to do and I'm happy with that its the quite time I don't like, thoughts rush in no matter were I am and the tears start its not a good look in the deli section of the supermarket and all because I ordered Danika's favourite thing ever, Bacon, so then it came to me when will she be able to eat solids so the tears started. Will she want to eat and not be able to or will she not want to move her face at all?

Its strange the things that come to mind

 

13 days to go

Im thinking it may help me to write a little each day as we count down the next 13 days. Not so sure that deciding to wait until we had a date to start worrying was the best idea..............

I have always known this day was coming and its been there just under the surface, some times more than others, like when some twit feels the need to point out my child looks different, or a kid  says something mean to her. The hardest part of that has been the blatant long stares from people every time we go out.

So now we move into the next stage of her life. Reconstruction...........

Yesterday I cried and cried, "cry me a river" springs to mind was it Justin Timberlake that sang that in a song?
Today they are there but just holding off which is good I don't look good frog eyed, red blotches and a runny nose, but a least I looked like I felt.

Now its time to get real and get on with it, I have to shop for PJ's and t shirts for Danika that do up at the front she can't have anything go over her head for post op. This is not a shopping trip I will call retail therapy.

My dad and step mum (I'll only refer to her that way this once as she is more of a mum than the one I have) are coming to Melbourne on the 4th and I can't thank them enough for flying from Perth Western Australia to be with us. Darren Claire Danika and I are so welcome of their support.

Claire(big sister) had already booked the week off work as we were going to the Gold Coast on the 3rd until the 9th of October for Danika's Starlight Wish she wants to swim with the dolphins. I tried to convince her she wanted to meet Robbie Williams without luck and the starlight team were onto me as I'm not the first mum to suggest this lol it was worth a try I say............ So you dolphins wait for my precious girl to be healed and strong then watch out she is coming to get you............







 

http://www.heartfelt.org.au/

Going to meet with an photographer from Heartfelt on Monday.
Thank you Steve Lovegrove.
I am looking forward to him catching some amazing shots of my beautiful girl, I want to see photos of her happy, sad and angry all of the feelings possible. I don't want to ever forget the way her face moves when she feels these things. The love she shows in her whole face smiling , the way her eyebrows raise just a bit when she is mad. It really is a gift Steve is giving us its HUGE
I just hope I stop crying before then as I can hardly see my eyes are so swollen.

A very big few days.

 Met with the brain surgeon Ms Allison Wray and she explained what her role will be during the operation but as she stated it will still be a wait and see approach as they have yet to operate on a case like Danika's. She told us the parts of the skull she will remove and I must say a huge thank you to my friend Erin for giving me the courage to ask that they don't shave Danika's head, they won't they will just remove the strip that they need to.

 She explained she will put a drain down Danika's spine for a drainage to help stop swelling. And that she will do her best to keep the Dura intact but with Danika's deformity it may well be that the dura is fuzed to the skull, This will not be good and will make her odds lower.
So the bomb drop was Darren my hubby asked if there was talk of a date for the surgery and Allison said yeah it's still the 5th and we both said the 5th of what? October she replied. I needed to sit down and I asked if she had a sick bag and I can tell you I was only half joking!
To say we are surprised is understating it a LOT.
That's just 14 days away........
I have been asked many times over the years it has taken to plan this surgery "are you worried about Danika's operation" and I have always had the same answer "I'll start to worry when I get a date" shit I have a date.........
That's all I can manage for now :)

Hi all,
I haven't fallen of the face of the earth, just been busy and Danika, I am super pleased to say has been really well.
I on the other hand, have been trying really hard not to think to far ahead in regard to her surgery, but Ive been struggling with that!!!!
I watch TV with Darren after all the kids are in bed and I'm so tired so off to bed I go and then I close my eyes and all this stuff washes over me.............

We are off to RCH Melbourne on Wednesday next week to meet with Ms Alison Wray Neurosurgeon extraordinaire (she was the one to separate the conjoined twins a few years ago) to discuss how she is going to protect Danika's brain during the operation and to stop any life threatening infection. we have been told if she gets an infection its about  96% chance of mortality, so clearly her job is VITAL
I feel all strange about meeting with her, it means we are getting closer and I'm not yet ready for that.

The following week we return to RCH Melbourne to meet the eye surgeon who's job it is to protect her eye site during the operation. Again if you have missed a blog there will be 11 surgeons from 8 specialities in the room all doing their part. Ive asked myself does this make me nervous or more comfortable that there will be so many in the room? I swing from feeling good and bad about it, it really just depends so clearly I am yet to decide.

Our very special paediatrician Dr Michelle Williams from Hobart has offered to attend the surgery, she will pop in and out and keep us updated, and I know she is super excited to witness such a rare surgery. She has been with us the whole time through all the ups and the many downs, we have her mobile number and we chat if and when needed she really is a bright light in amongst this hard journey.

Danika has had a great few weeks at school. They have had cross country and she ran yes I said ran the whole way and she wasn't even the last to cross the line. And then they had book week dress up and she went as Woody.




 

The question

On Saturday Danika started at Cosmos a day respite play group it was from 10am till 3pm. We didnt tell her about it until the Sat morning her anxitey was fairly high but we went and she did so well, I satayed for about half an hour and off she went with a carer to play in the garden, Well done Danika you were amazing. I picked her up and she had a really good day. We were having cuddles on the couch before bed and she looks at me and says "mum I dont have a funny nose do I"

Oh no I don't want you to ask me this! I ask her why, and she tells me a boy from Cosmos said she did, Oh bub it breaks my heart too have to answer your question its not the answer I don't like its the fact that she even has to ask me, Why does my child have a funny nose? Why do children say things to her? Why do people stare at her? Oh its not easy to explain. I look her in the eye and tell her her nose is a little different but its just beautiful because its HER nose and I love it................

Danika playing dress up at Cosmos, yes my girl you really are a SUPER HERO

This presents the question what will she think after the surgery.  How will she feel when she looks into the mirror? Her lack of understanding for her age has helped in some cases, Will it help then or will it be a huge distress?...............Will she want the old nose/face back? Will I want the old face back? How will all the friends she has made at school cope will they be worried about the new way she looks? She will sound the same but not look the same, my heart stills as I think of all the challenges my beautiful little angle will have to deal with. There is a psychologist connected to the craniofacial team we will be looking to her for plenty of advice and  support.

You are my hero Danika!! 

What a day! meltdown

Yesterday Danika and Darren took Panda the Pug to the vet, Panda has a sore eye. All was going well until it was time for the vet to take Pandas temp, poor Danika totaly lost it shouting "dont put that needle in my dogs bum", dad stop her........lol Poor Darren he was trying to hold the dog on the stainless steel table and hold onto Danika as she started to grab at the vet.....insert laughing mum here! Today I picked Danika up from school today and she is really excited she is having her delayed birthday party at Kidz Bizz Sunday. We had a play on the swings (good calming activity) she was supper happy we went and got an icecream from the deli on the way home. We got home and thats were it all changed, Darren is sitting on the couch feeding Angus nothing wrong there! Danika starts screaming and crying, trying to run out the door throwing everything she can get her hands on, this went on for about 10min before I finaly found out what was wrong......Darren had his hair cut today very very short a number 1, and Danika finaly said "I dont like his head I can see his brains".............oh Danika you are so cute she meant his skull. Meltdowns............are part of the life of a child with ASD there alone one with Fetal Alcohol Syndrome and ADHD (I feel the need to again point out I am not Danika's birth mum) The only good part about a meltdown, and I do mean the ONLY thing is that Danika has no connection to the event after it has happened.

School Photos

Wow today is school photo day that may not seem like a big deal to some but to us it is. Danika will be just one of the class today when she stands proudly next to her FRIENDS, this year our beautiful Miss D will not be wearing her helmet nor will she have a nasal gastric tube down her nose......... She will just be one of the sea of green and yellow children awaiting there turn. We will always treasure her first school photo, as it is just that "her first" but it holds so many bad memories that I dont think I will ever shake. Danika had just gone back to school this time last year after being in Status epilepticus. She spent 7 days in ICU and weeks on the ward recovering and re learning old skills, how to eat, walk and talk, then weeks at home getting strong enought to face school, then it was photo time. Isint it strange that one thing can trigger a chain event, I dont think about last June very often we live in the now, but the silly school photos have made me realize how close she came to not making it and how quick life can change. So bad mum for losing my patience with her last night when she wouldnt let me dry her hair after her shower, but thats the way it goes!! Insert judgment here........ But we dont treat her any different she is Danika full stop and I will be cross with her and proud of her and all the other feelings a mum has because she is my daughter and I love her.

GettIng back to normal!

Danika went back to gymnastics last night, she wasn't sure at first it's been a few weeks off but off she went and didn't miss a beat. She didn't do bar work as her tummy is still a bit sore. It was really nice to have so many people came up and say " hi Danika" we missed you! Some people I didn't even know. How nice thanks all at

going well

Danika is back at school and mum or dad are going up a few times a day to "burp" her peg (just letting the air out)until a nurse from the Hobart hospital can teach a staff member how to do it. Danika likes her new Peg but is not keen on sleeping with a bag connected over night, it was a wonder she didnt float in the air last night it was so puffed up with air, she actually came into our room and said "my bag needs burping" oh bless her cotten socks. Saw the surgen yesterday Mr Ee and he is happy with her from a surgical side so no more Mr Ee woohoo, we also saw Dr Michelle and it still remains a mystery as to why Danika has a distended tummy and "the" vomit.... More appoinments came in the post this week for the craniofacial team in Melbourne, one for the 19th September to see an eye craniofacial/surgeon and then on the 25th to see the Neuosurgeon ahhh two trips to Melbourne a week apart, they are all going out of their way to get her in. Dr Michelle told us yesterday she is listed as an emergency case so she can have it done sooner, great thanks guys but im not sure im ready for that, the idea of a new face is not something I am finding easy to come to terms with as I have stated before I love the face she has now! If she didnt need the surgery we woudlnt be doing it, in fact I have tried to talk the doctors out of doing it. It seems in conceivable to me to change anything on my beautiful daughters face, no point in trying to even think why cant everyone see the same perfect face I see? judgment is every where those people staring at her in the shops I see you!! she sees you but luckly she doesnt understand your raised eyebrow, for now anyway......

 

 photos of Danika turning 6 in the Royal Hobart Hospital

 Birthday toast

 the rocket mum ordered and the great cake the nursing staff ordered

presents on the end of the bed

Dont add pressure.......please

School are on the phone worried about what they have to do for Danika when she goes back, come on guys we can work it out, training orginized tick, mum on standbuy tick danika able to help with her needs tick. lets just do it!

hospital again!

Monday the 25th we went to the hospital for a day procedure to have the long term PEG inserted. well we ended up staying for 6 days. The surgeon can out from Danika's op and told me all went well but how long has she had the distended stomach? My reply was since January along with loose poo and some pain and vomiting. He wanted to know why I hadn't said anything, well I have ive been working with her peadeatrition to try to solve the problem. so off to the ward we went and test after test, one very bad night in the mix were poor Danika acutally vomited poo, yep I said poo, doctors came running this is a medical emergency. More test and an unhappy mum later and Danika is back in the operation room. They still have no answer as to what is wrong or even how she managed to vomit poo.

Mum and dad and all the family and our very special friends are all saddened that Danika will have to spend her 6th birthday in hospital, 3 out of the last 6 is just so not fair!

Saturday the 30th June Danika wakes up to a decorated hospital bed, presents wrapped and nurses every where wishing her a happy birthday, the wonderful staff ordered her a cake and we had a party in the playroom, Claire brought in a box of party supplys donated by her friends at coles in Kingston and all the kids in the Peads ward all came in for a party. Thank you all it was wonderful, even one of Danika's teachers came in, all the kids had a great time with the rocket cake and the one the nurses ordered. But the best news came a little later.....

Mr E came in and told us we could go home!! woohoo yippee and THANK YOU I get to learn a few more nursing skills to help Danika's care and with a list of instructions off we go....

What a lovely night at home, Danika looked so beautiful all snug in her own bed and we all loved having her home. I found it hard to sleep lol as it wasnt the hard thin fold out bed i've slepted in for the last 5 nights....

I want to thank my friends for your support and kindness, your seemingly small offers of help and visits meant the world to both myself and Darren. It made all the difference.

Back to the hospital this week with outpatient appointments but Danika is doing ok.

She is trying to prove her point that she really is one of a kind!!!! Danika we get it.....

 I am also going to add some photos of Danika having a week in the RCH http://www.rch.org.au/rch/home.cfm  having video EEG. Danika has seizures due to the masses in her brain, so the consultant was testing to see if they could safely remove her entire right frontal lobe. Danika went into status epileptics on June 1st 2011 and she came within a cats whisker of not surviving, so these test are important to her future plan for wellness. 
She had to stay on the bed for 24/7 for 5 days ahhhhhh was not easy for a well child to sit that still but she did great, we played snap so many times I don't want to play another card game ever, and the lego was a big hit. 
Always smiling :)

Well tonight we are feeling a bit out of sorts, Danika is having a minor surgery in our world not so minor for other kids, She is having her PEG changed to the permanent one, she will just be there for the day. I have been talking to her about it for a few days now but I know it wont help in the morning. She has ASD and is extremely orally adverse so she is going to freak when they try to put the gas mask on her to knock her out......I hate the way I feel so useless and helpless when they put her to sleep as she is crying for me. I wish there was a different way to put her to sleep.

the current PEG

It will be really good for her when its done no more worrying about someone touching her tube or her getting it caught on the play equipment.

one of the other 50 children born with a tessier cleft, this is beautiful

http://www.godvine.com/Mother-s-Inspiring-Video-About-her-Blind-Baby-Boy-1484.html

Craniofacial Team Visit Friday 16th June 2012

Off to Melbourne we go again, Danika just loves it and is very good at flying, but all things being equal this trip didn't start out so well. We are just making our way through security at the Airport and Danika panics for some reason (not all ways clear to the rest of us) and runs straight through security screening, well it didn't go down well I run after her, two security guards grab and yell at her and there is me close behind shouting louder than them, "don't touch her she has autism". I get her and we go back through the scan Darren takes her to sit down to watch the planes while mum (me) gives the security guards a strong talking to..............need I say more! 

Melbourne was good nice to see the wonderful team and they just love her to bits . We all talk surgery for two and a half hours,  I am exhausted my brain feels heavy with information I have to take in. The first thing Darren and I find strange is seeing a exact copy of Danika's skull, its the strangest feeling, hard to explain what it feels like to hold your daughters skull in our hands. Danika has been having 4D imagining since birth so they have been able to make this 4D plastic copy.

This is her Skull and Danika sticking her finger in her own mouth! 

The operation is not going to be easy. There will be 11 surgeons from five specialties in the room and they think it will be at least 18hrs all things going to plan that is. If she has a seizure on the table they will try to stabilize her but may have to stop and take her to ICU and start again in a day or two. They are all very confident in her doing really well after the op and have told us she will not look good for several days as the bruising and swelling settle. This is my baby's face.............not an arm or a leg or even an ear thats need reconstruction but her FACE the so called window to her soul, I can not form words, not even in my own mind to be able to tell you how it feels to know she will look different from the beautiful girl I love. The face I stare at, have kissed a million times, the face that smiles, shouts and kisses me back!!!  I'm going to leave that thought there and move on....

Here are some photos of the team of wonderful people that are the Craniofacial Team at the Royal Melbourne Children's Hospital. 

Professor Anthony Holmes

Danika socializing with the co-coordinator Pru and a specialist IT tech

Me holding Danika's skull

Mr Andrew Greensmith checking Danika out

Danika happily writing her name on their paper work

Andrew this is not a look of a confident man!

Danika socializing still

her images on the screen

Her skull

Planning

look at you cutie pie

our beautiful Danika years ago

ohhhh cute chubby bubby

Our story

Darren and I would like to share with you the amazing journey that is Danika's life, how she has defied doctors from the very second she was born and the amazing job she is doing each day. This is a record for us to look and reflect on no matter where we are in the world. So cry with us, laugh with us but most of all be proud of Danika like we are!!!

 

Our very first photo of me holding Danika

It was June 30th 2006 we got a phone call from child protection (CP) asking us if we would take a new born baby girl, but she was going to go onto a 18yr order so we need to be sure we can commit to that......wow big ask! I asked how old? the reply was she is just 30mins old and will be removed in another 30mins but she needs to go to the NICU as she is fighting for her life........OMG why I ask, she has been born with no nose I am told. What does that mean? the reply was we don't know we haven't seen her! As you can imagine I have no idea what to think at this stage but there is more..........She has also been born with the highest level of drug addiction recored at the Royal Hobart hospital so shes is needing a drug withdraw program.
So much information but not enough either so I ask if I can see her? Child protection not happy at that request but to bad I go see her and its the hardest thing I have ever done..........she does have a nose its just not a normal one (we find out later why and what caused it) anyway I am standing there looking at this tiny little pink skinned baby with a very different face and all covered in medical tubes iv lines, wires and machines everywhere............OH MY GOD I love her already. we say yes and the rest of this page will show and tell you of the last 6 years.

Come on the journey that is Our Danika

Getting the hang of it. I think

ok so ive got started Ill be back............good night see you again soon :)

photos of Danika

Hi there chubby cheeks

snuggles with big sister Claire

sleeeeeeeeepy

awake

oh no whats with the hat?

I can do it myself!

ta

not smiling for the camera

boo

it was this big!!

chocolate cake

wasnt me!

me and daddy

move over Ted its me they want in the photo

ohhh so tiny and sooo cute

my big brother Hayden